Seems insane that profitability so heavily dictates what is researched and what isn't.

silisili 2 hours ago | parent | next [-]

I don't mean to disagree with you in spirit, but profitability is pretty closely entwined with probability. So companies are chasing solving problems that more people have, even if it's for the wrong reason.

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ehnto 2 hours ago | parent [-]

As the benefactor of an extremely rare disease, it's not exactly unfair when you look at it from a societal view. If you solve a higher probability problem, you are helping far more people.

The real tragedy isn't the allocation of the resources we have spare, it's that so many of our resources are not spare because billionares and corporations have hoarded it.

Without changing the percent of allocation, and only changing input resources by capturing it back from billionaires as taxes, we could be helping far more people including super rare diseases.

	▲	AdamN an hour ago \| parent \| next [-]
		I don't know how much longer it will last but the US government invests significant resources into rare diseases in order to improve outcomes where the normal market wouldn't otherwise support the r&d.
	▲	silisili 2 hours ago \| parent \| prev [-]
		Absolutely. And if you take a step back and look at Covid spending, what it was spent on, and how much fraud was involved, it's absolutely maddening that the government isn't instead spending money on solving actual problems its constituents face. We basically just shoveled free money at anyone who claimed to have a business, to no real effect. C'est la vie, I guess.

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alex43578 an hour ago | parent | prev | next [-]

A metric other than profitability seems like a terrible target for private research which (outside of a charity or cause-driven org) needs to justify its expenses.

In the US alone, we have dozens of grants, programs, and funding sources for things like orphan/rare diseases.

	▲	johanvts an hour ago \| parent [-]
		Profitability works because it is/was a good proxy for utility. This breaks as wealth becomes unevenly distributed.

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big-chungus4 34 minutes ago | parent | prev | next [-]

The reason why it's less profitable is because it will help less people. If profitability didn't dictate what is researched, widespread diseases would get less researched and rare diseases - more researched, which would be a net negative.

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heavyset_go an hour ago | parent | prev | next [-]

IMO the issue isn't discovery and research, it's development. Unless companies foresee a good return for buying/licensing/etc rights to treatments, discovered drugs with potential just sit there.

What sucks is when drugs are deliberately not brought to market, but kept in portfolios, because it might impact sales of other existing cashcows. For example, Gilead has a history of staggering the release of new drugs only once their patents expire for similar drugs they already have on the market.

	▲	david_shi 11 minutes ago \| parent [-]
		Didn't they also effectively cure Hep C? https://www.cnbc.com/2018/04/11/goldman-asks-is-curing-patie...

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s1artibartfast 2 hours ago | parent | prev [-]

I find it makes more sense if you drop the corporate analysis and just think about people.

Money motivates them and is why they go into hospitals or research labs instead of staying home with their family or friends.